Producer Gordon Gray Hoping For A Facebook Miracle; Race Against Time To Save His Daughters From Rare Brain Disease

June 9, 2015 8:16am

Gray Foundation

In his long career as a film producer, Gordon Gray is best known for making inspirational fact-based sports movies about subjects who overcame long odds, from baseball pitcher Jim Morris in The Rookie to football player Vince Papale in Invincible, to the gold medal-winning U.S. Olympic hockey team in Miracle. After Gray and his wife Kristen learned in March that both their 4-year-old daughter Charlotte and 20-month-old daughter Gwenyth have the incredibly rare and potentially fatal degenerative brain disorder Batten disease, it is Gray who is up against the odds and in need of a miracle.

After they received a nightmarish medical diagnosis in March, the Grays were told so few suffer from the disease — maybe 10 at any given time in the world — that there has been limited research towards a cure even though the disease was first discovered in 1903. At present, there is no hope to stop Gray’s daughters from progressively losing their sight, followed by their motor skills and ability to feed themselves. Most children with Late Infantile NCL Batten Disease CLN6 die between the ages of 6 and 12. The Grays sought counsel and support from a core group of Hollywood friends, and together they formed a plan to fight back. They formed The Charlotte And Gwenyth Gray Foundation.

The foundation is taking to Facebook to help them raise the $10 million-$12 million needed to fund urgent medical research they hope will arrest and cure the disease. It will take an initial $2 million to launch the trials necessary to prove the treatments will work, and the rest of the funding will see it through. The following stars are making fundraising appeal on their Facebook pages: Rihanna, Dwayne Johnson, Megan Fox, Mark Wahlberg, Channing Tatum, Jenna Dewan Tatum, Seth MacFarlane, Jennifer Garner, Jon Hamm, Jessica Alba, Eva Longoria, Jessica Biel, Ali Larter, Darius Rucker, the musician Juanes, Walking Dead star Norman Reedus, Julianne Hough, Brooke Burke, Molly Sims, U.S. women’s soccer star Alex Morgan, basketball player Jason Collins, and NFL quarterback Andrew Luck. Many of them will post on Twitter and Instagram, as well.

Each plea will ask followers to donate $1, with the idea that the money could add up quickly. Rihanna has 94 million followers, and The Rock and Megan Fox each have 50 million followers. If 5% of Rihanna’s followers accepted the challenge, that would raise $4.5 million and they would be almost halfway there toward giving Gray’s daughters a fighting chance.

The short video that each celeb will post tells a heartbreaking story that is any parent’s worst nightmare, and you can view it here.

Charlotte was just like any normal little girl, a smile machine who is tall for her age, graceful, sociable and an exceptional athlete. At 2 1/2 years old, she began having trouble finding the words to convey her thoughts, which led to a speech therapist who assured her parents she would grow out of it. Shortly after, her coordination began to subtly diminish, along with her interest in playing sports. Charlotte was then diagnosed with autism, which didn’t ring right with her parents. Last Christmas Eve, she tripped over a present and her arm shook when she regained her footing. Shortly after, a dose of Tamiflu led to convulsions. Again, doctors told them not to worry. Fortunately, they captured the convulsions on an iPhone, which led to an EEG that showed the first signs of abnormal brain activity. An MRI followed, along with another diagnosis, this time Leukodystrophy, which is the degeneration of white matter in the brain. A gene sequencing procedure followed, and then in March, a geneticist at UCLA finally had a handle on why Charlotte was changing.

“I was there with my wife, and the meeting went something like this,” Gray recalled. “He told us, ‘Your daughter has Batten disease, it’s incredibly rare, it is fatal. And there is no cure. They’d found another person afflicted by this variation of the disease in India, so the diagnosis was confirmed. I asked if there was anything else he wanted to say to me, and he handed me some brochures.”

The Grays by now had been reading voraciously about all of the previous diagnoses, and before leaving, they had one other question. “I’d read with inherited disorders, there could be a 25% chance of a sibling having the same disease, and I asked about my daughter Gwenyth, and we scheduled a blood test,” Gray said. “I got the news on Charlotte on March 2, and then a week later we were told that Gwen had it, too.”

The condition is so rare that there aren’t even any Batten specialists in California. Gray’s research into Leukodystrophy led to a Duke University doctor who’d done a bone marrow transplant that helped. Gray saw that as a sign and it launched him on a quest, if only to be able to do something.

“I was in shock from the moment I got the news, and I felt like if I kept moving and digging and fighting, I wouldn’t lose my mind,” Gray said. He scoured the globe for any encouraging signs. A frat brother who became a venture capitalist with biotech investments led him from one researcher to another and finally to a researcher working in New Zealand with a “vector virus” similar to Batten that cured one of six sheep in the study. “He was looking for greater efficacy so he can ultimately move into human trials,” Gray said. “I asked, ‘What can we do to give my daughters a shot and he said he was two to three years away at best and what I needed to do is prepare my house for wheelchairs and blindness. ‘There is really nothing I can do for your daughters at the moment.’ ”

Unbowed, Gray asked if money might accelerate the process. He was told it would. “He said, ‘I have something here that I believe will be a cure, but there’s no funding for it right now. Nothing. You would have to personally fund the research, the trials, everything, including the surgery.’ I said, ‘OK. I’m a film producer, and everyone assumes when they read the grosses that I’m keeping every dollar, and in that sense it helped because doctors were paying attention when I said that I was going to find the money to progress and accelerate this research.”

By now, Gray had shared his story with a core group of fellow producers and execs, many of whom are also parents of young children. A steering committee was formed including Scott Stuber, Neal Moritz, Jason Blum, Sean Bailey, Mark Vahradian, Lorenzo di Bonaventura, Basil Iwanyk, Beau Flynn and Jim Whitaker. They meet each week to hatch fundraising plans. Contacts at Facebook made possible this first fundraising foray, and a growing group of stars agreed to use their reach to get the Grays the substantial money needed to give them a chance in this ticking clock race. There are no guarantees for the girls, but three potential treatments would be verified over a six-month treatment, a gene therapy/vector virus that was successfully tested on one animal model; stem cell therapy; and small molecule therapy.

Deadline isn’t a fundraising tool, though I did write about Karen Black and her husband’s crowdfunding effort for an experimental treatment for the cancer that would claim her life, because their desperate attempt felt brave. While Gray was describing his effort to stave off a death sentence for his daughters, an electronic picture frame on my desk shuffled photos of my own kids as they grew. This is a great business to cover and to work in, but once you become a parent, it is a job and nothing else really matters but your kids. Most parents would be helpless, facing such a cruel diagnosis as was given the Grays in March. It is impossible not to root for any parent who refuses to take no for an answer, particularly when they are fortunate enough to be in a position to raise what seems like such a large amount of money, and when it seems there is a real chance it might work. Beyond the Batten treatments, the foundation will endeavor to raise money for other childhood afflictions, but right now the priority is clearly on Batten.

Given his producing resume, it’s not surprising that Gray likens this attempt to a famous sports comeback.

“When I explain to people, I talk about Doug Flutie and Boston College and that Hail Mary pass in the Cotton Bowl,” Gray told me. “What I’m trying to buy right now is three Hail Mary passes before I run out of time. I don’t think I will, because I have a doctor who thinks we can move quickly enough to save my girls. And If we save the girls, and I don’t want to sound reckless, but we’ve potentially cured this disease.”

This article was printed from https://deadline.com/2015/06/gordon-gray-daughters-batten-disease-fundraiser-pledge-1201439934/